Chronicle of a Stem Cell Transplant (and on through to the other side)

Thursday, July 10, 2008

Back In The Saddle (Well, Sort of...)

It's been quite a month.

Most significant, of course, is the gravity of Teresa's passing. On our recent trip home to Vancouver, we were able to attend a celebration of her life and it was clear how much love was present for Teresa and her family. Still, it was extremely difficult to watch a family, whose experience these past few years so closely resembles our own, go through this. Yet, they continue to do so with such strength and grace.

As time passes, it also affirms my belief in the infinite life span of all energy on the planet. The idea that, while we may lose family and friends in their "earthly" form and this is indeed painful, our ability to keep them alive in our memories combined with the idea that energy doesn't die, but merely changes shape, is very comforting to me.

I believe that Teresa, my grandpa, and other loved ones I have lost are no less real or vital now than when they were here in bodily form. I guess it would be much easier to believe in the concept of angels, but the idea of energy/matter and quantum transformation is what resonates with me. Thus, Teresa's essence remains very present in my heart and memory and, I believe, in the very air we breath.

While paling in comparison, but taking up much of our time this month, was the realization of how the impact of stress and fatigue affect my body (or anybody's, for that matter). This is currently one of my biggest challenges mentally because I am easily frustrated by feeling weak or confined, which makes "proactive" rest a challenge. However, I think I have learned my lesson.

Near then end of our trip to Vancouver, I ended up in Emergency overnight for acute abdominal pain. Not a fun night for anyone and made more difficult by being away from Montreal where they are familiar with the clinical trial drug I am taking. We also had a doctor who didn't want to phone and wake up my oncologist in Montreal to see if it was OK for me to take morphine with the trial drug. However, it was far less important to us that my oncologist get his beauty sleep than it was for me not to ingest a lethal combination of drugs. Go figure.

In the end, after much blood work, an ultrasound, x-rays and a CT, it turned out that I was... extremely constipated. As in, full-to-the-gills-get-thee-an-enema-now, constipated. Yes, my friends, I was full of shit (but, as I have since said, some of you already knew that). So, we geared up and got 'er done, so to speak. However, delicate flower that I am, I threw-up, nearly passed out and needed oxygen.

While I did feel some relief, it didn't get rid of the intense abdominal pain and so it was a tough decision as to whether to head back to Montreal as planned the next day. I desperately needed rest, but had my first PET scan scheduled there on Monday which, because of the trial drug company, has to fall within a certain date. So with a lot of help and support from my parents and Ian pushing me through the airport in a wheelchair, we arrived in Montreal at 1:00 AM and were at the hospital for the scan on Monday morning at 8. However, with everything else I needed to have done, it ended up being another full day at the hospital.

We were able to rest on Tuesday, if you call waiting for scan results which will tell you if what you've moved across the country to do is working, "rest."

Wednesday - a wonderful reprieve! The PET scan results indicate a "partial moderate response" of up to 50% in some areas. This is very good news, but we were so tired, we could hardly absorb it and I was still in a lot of abdominal pain, so my reaction go to sleep.

On Thursday, we spent another day at the hospital waiting for over five hours to see my new oncologist (who has taken over the trial and whom, so far, I like very much). He recommended that I come back the next day for more testing.

So, back to the hospital to spend another full day on Friday, trying to sort out the pain with more tests. Still, nothing conclusive. After hours spent trying not to lose our minds, in the end, the prescription for my ongoing pain was...another f*ing enema!

Now, I know I'm probably already guilty of bestowing you with too much information by this point, so you may want to stop reading if you've heard enough of the details. Unfortunately, I just can't resist relaying this because it is hard not to laugh...after the fact.

Some background information before I proceed...when I had Enemy (I mean, Enema) #1, I was cordoned off in a private room with four walls, a door and a commode at the ready. It was literally all I could do to roll myself from the bed to my waiting throne in time, if you know what I mean. Then, you know the rest...proceeded by throwing up and the oxygen mask.

So, when it was time for Enema # 2, I was a bit alarmed when my doctor said I would be having it right there in the examination room and then using the nearest icky "public" toilet down the end of a long hall (the entry to which was also in full view of the of waiting area) to, er, get to work. I sat there for a minute trying to figure out the logistics of this because, really, one has to be practical here and I decided that there was no way that I could, in all earnest, have this "procedure" done, amble down the hall, only to find the restroom possibly occupied. Indeed, shitting my pants in public is not on my list of things to do.

When, nearly an hour and a half later, a nice nurse came in to "get started" (I must have really made his Friday afternoon), I explained the situation and asked if it would be possible to get a commode in the room with me. Much to our surprise, it being a hospital and all, he said he'd never seen one there before, but went off to look anyway. Another forty minutes later, he returned, not with a commode, but, with Plan C. We were going to the chemo ward where I would have a private space and a commode at the ready. Bravo!

However, when I arrived, it seemed my private space was in the middle of the ward surrounded by a knee-length curtain. Trust me, by this point, it was not the visibility of my soon-to-be proceedings that worried me, but the ill-fate of the poor woman lying in the bed next to me. Bald, frail and undoubtedly nauseated from the chemo chugging through her veins, this woman was now going to have to endure a full-sensory experience - of someone else's enema!

In the end (ehem), it was a far less uncomfortable (for me) compared to the first time around and I had a very skilled and competent nurse who made it about as easy as these things can go. I was also able to lie around "recovering" behind the curtain long enough to have everyone finish their treatments and leave for the day. At least, I think that's why there was nobody there.

So, that was one of the "shitty" parts of the last month. All in all, our visit home enabled us to spend some well-needed time with our parents, family and friends (though, not nearly enough). We were also able to attend Lisa's Team in Training (TNT) fundraiser, Century @ Deuce, which was a great success.

At the fundraiser...(Lisa already knows I'm full of shit).

Now, I am finally starting to feel better and it seems all the abdominal pain was actually unrelated to the constipation and more likely some sort of soft-tissue tear. I unknowingly did this to my other side several months ago and experienced the same sort of excruciating pain. I wish I knew how it happened so I could not do it again.

This week, I have heeded the warnings and have been resting most of the time, barely lifting a finger (poor Ian). It seems to be working, because the pain finally seems to be easing. We have also begun to let the positive news of my recent PET scan kick in and will proceed, as we always do, with cautious optimism - and a trip to the Ben & Jerry's mecca in Vermont for a celebratory ice cream cone. Mine will be "Half-Baked," of course.


Life isn’t about waiting for the storm to’s about learning how to dance in the rain.

Thanks, mom.